special needs

New photos of Eva

New photos of Eva

I have hundreds of photos of Eva. My phone is never far from me and I used it, a lot, to capture her smile, her successes in tummy time, he cry, I captured everything I could. Even with these hundreds, and the dozens of videos I captured too, there is… Read more

Disability as a unique demonstration of diversity – not misery

A woman kills her 20 year old daughter and the public’s response is to call it a mercy killing. Donella Knox murdered her 20 year old daughter Ruby, who had severe Autism spectrum disorder and intellectual disability. The Herald reported that Ruby had a number of associated conditions in addition… Read more

Podcast transcriptions coming!

It’s been a long time coming, too long in fact, but very soon I will be getting transcriptions for the podcast. It’s something I’ve always meant to do but with working full time and podcasting on the side I haven’t had a lot of extra time to sit down and… Read more

Ms. Harrari, is it you that gets to define quailty of life?

On August 6, The Sydney Morning Herald published a story entitled “Parenting an intellectually disabled child: life forever on duty” about Alex Brown and his mother Vanessa. Alex is a 22 year old man who has Sotos syndrome. He is non verbal and has an intellectual disability. He spends week days… Read more

We can’t just condemn

Satoshi Uematsu, 26, killed 19 people and injured another 26 in a centre for disabled people near Tokyo, Japan, this week. He did so under the premise that he wanted “to rid the world of disabled people”. In February he sent a letter to a politician outlining his plan. He… Read more

Meeting Chiara and Natalie

Meeting Chiara and Natalie

I am proud of the fact that my guests on the podcast are from all around the world. I want to show both the universality of our experiences and the differences. It does mean, however, that I will likely never meet most of my guests. After I talk to them… Read more

Invisibilia: The problem with the solution

Invisibilia is one of those podcasts which never fails to impress me. Every episode is beautiful, crafted, intelligent and interesting. Every episode leaves you thinking about some aspect of the world in a new way. This episode was no exception. In fact, it may be my favourite episode from either season.… Read more

Episode 10 coming soon!

In May I got prolific with the podcast and put out two in a month. This month, has been less productive. I haven’t managed to record until the weekend just been and I’ve watched the 1st of July sneak closer and closer with no material. I realised something, it’s hard… Read more

No excuses: Imagine it

No excuses: Imagine it

“I can’t imagine what you are going through…” It’s a phrase that every parent who has lost a child has heard multiple times. It’s meant well. The speaker wants to let the griever know that they recognise the magnitude of this loss. They’re trying to validate the griever’s feelings by… Read more

Feature in the SOFT UK newsletter

Feature in the SOFT UK newsletter

A few weeks ago I was contacted by a representative from SOFT UK, which is a charity that provides information and support to families affected by trisomy 13 (Patau’s syndrome), trisomy 18 (Edwards’ syndrome) and related conditions. They provide support through the many stages families may find themselves in from… Read more

Words matter

In the New Zealand media, a city mayor recently came forward admitting he had been wrong. He said he had been dismissive of the needs of Maori. He called himself a recovering racist. He asked for the people of New Zealand to think about their own actions. Andrew Judd did something… Read more

Medical cannabis: Anecdotes may not be enough, but they have power

Every year that I have been a teacher I have had my senior students write opinion pieces. I have told them to write about something they feel strongly about. It can be humorous or serious as long as it is writing in that style. They need to use language features;… Read more

Singing in the shower

Singing in the shower

Last night I was talking to my boyfriend about the things we do when no one else is around. He admitted that he sings in the shower – I doubt I’ll ever get to hear it, but it made me smile. He asked if I did, and when I thought… Read more

Mother’s Day – in recognition of a special group

Mother’s Day – in recognition of a special group

It’s Mother’s Day in New Zealand tomorrow. Last year I wrote a sort of ode to the other mothers like me who find Mother’s Day harder than most. I wanted to recognise all of those mothers who weren’t necessarily feeling like the mother they were that day. Perhaps, like me,… Read more

It’s the world that needs to change

I don’t always watch these kinds of videos. But someone I trust shared this one so I watched it. As I was watching it I started crying thinking of the video I don’t get to make of Eva reaching some of those milestones. By the end I was nodding and… Read more

A club you never wanted to be part of

A club you never wanted to be part of

It’s hard to press publish on a blog where the majority of the posts are about grief. It’s hard because I’m writing what I’m feeling, but I don’t feel that way 24 hours a day, or even every day. I hesitate to press publish because I know it makes people… Read more

To remember her

To remember her

I am house sitting for my old house family this weekend. They are taking a much needed holiday with their son and I am spending the weekend with their dog, not a bad way to spend a weekend. It’s the house where Eva and I lived together. It’s where we… Read more

This moment is yours

This moment is yours

My big sister lives in Vancouver, Canada. When Eva was born and things got tough, she had to watch from afar. I know she found it hard. Thankfully, she got to meet Eva before she died. She returned again to New Zealand for Eva’s funeral. Living that far away, I… Read more

Episode 00: An introduction

Episode 00: An introduction

[podcast src=”https://html5-player.libsyn.com/embed/episode/id/3802674/height/360/width/480/theme/standard/autoplay/no/autonext/no/thumbnail/yes/preload/no/no_addthis/no/direction/forward/” height=”360″ width=”480″]It’s here! The first ever episode of The One in a Million Baby podcast. It’s not perfect, but nothing is. This episode is a starting point, a way to begin. It’s my way of introducing listeners to me, to Eva and to our story. It’s my way… Read more

Discovering stories – Bethany Van Delft

Discovering stories – Bethany Van Delft

I get so excited about discovering new things these days. New friends to meet. New TV shows to binge watch. New comedians to make me laugh. New stories to inspire me. New music to smile to or cry to. New authors to read. It’s a big part of why I’m… Read more

One year ago today

One year ago today

Facebook has a lovely memory function where it pulls something, a photo, or a post from your past and chooses to remind you about them a year on, or five years on. Today, a photo of me holding Eva in Starship hospital popped up. “See your memories,” Facebook prompted me.… Read more

Pulled off your feet without warning

Pulled off your feet without warning

I was watching the news tonight. I had just seen a three year old boy pulled from the water. One of Syria’s children. I breathed deeply as the limp little arms hung over the man’s hands. I put my hand over my mouth and swallowed down a rising wave of… Read more

A taste of things to come

A taste of things to come

I have audio! It’s not much. A quick teaser of the intro I’m planning to play in each episode, but it’s something. Next weekend I am having a pre-interview chat with my first subject, and then we are going to get down to recording. I have a few small kinks… Read more

The Platinum Fundraiser

The Platinum Fundraiser

I’ve written before about that platitude that special needs parents get told that they will meet “some of the most amazing people” through being their child’s parent. The first time I heard it I rolled my eyes and scoffed. What possible friendship could make this situation alright? I thought. It… Read more

Our summer

Our summer

A colleague told me he had to drink a lot of water after reading yesterday’s post, to replenish his tears. So I looked through my photos and decided to share something happier. Our first and last proper holiday together. Over the summer Eva and I drove to New Plymouth for… Read more

Eva's things

Eva's things

I picked up Eva’s things today. When she died, the coroner’s office took her bedding, her sheets, her blankets, anything in and around her cot, for testing. Most of it was replaceable. But there was one blanket, a crocheted woolen brown blanket, that I wanted back. I used it from… Read more

This vulnerable infant

This vulnerable infant

Eva’s post mortem arrived today. It’s been over five months since she died. A letter came with the full report, instructing me to open the document in the presence of a friend or family member. I didn’t take heed. Thankfully, Eva’s paediatrician had already told me the crux of it.… Read more

Why are there so many songs about rainbows?

Why are there so many songs about rainbows?

I started my second round of sign language classes today. We started off just about where we left off, talking about our families. There were three people from my earlier classes, but the rest of the class was new to me. And I “talked” about Eva. More than once. The… Read more

I'm in a unique position, and I know it

I'm in a unique position, and I know it

I’m in a unique position as a special needs mother. Eva died in one of the slightly easier stages of her life. I had got past the difficult first months. The time of adjustment and grief. I had accepted my girl for who she was, but as a baby the… Read more

Podcast update: equipment is arriving!

Podcast update! The first lot of equipment has arrived. I have microphones! And microphone stands! And a digital recorder! And microphone cables! I don’t usually use exclamation points. Can you tell I’m excited? Once customs clears it, I will have the mixer, and then I am just one Amazon package… Read more

The next step – The One in a Million baby as a podcast

The next step – The One in a Million baby as a podcast

This post is going to be different. I am excited. Really genuinely excited. I can feel life buzzing away in me. I can feel Eva’s influence on that excitement and feel her steering me gently into the project which is making me so excited. I wrote a while ago about… Read more

A lesson in humility

A lesson in humility

This post pains me to write. It involves me admitting some things about myself pre Eva that I’m embarrassed of now. I feel ashamed of the thoughts and feelings I had and it’s easy for me to sit on my self-righteous pedestal with my new thoughts and feelings and forget… Read more

The variety contained within the common

Yesterday I reblogged a post by Star in her eye about Strange Luck. The piece talked about the luck the writer felt at the issues her daughter didn’t have, in comparison to other children with the same syndrome. Issues most parents don’t ever have to feel lucky about, or don’t… Read more

As long as it's healthy

“Do you have a preference for a boy or a girl?” The pregnant woman pauses. Considers her belly and gives the typical answer. “I don’t mind, as long as it’s healthy.” It’s the standard response. I know I gave it myself many months ago before I knew the Peanut was… Read more

As long as it’s healthy

“Do you have a preference for a boy or a girl?” The pregnant woman pauses. Considers her belly and gives the typical answer. “I don’t mind, as long as it’s healthy.” It’s the standard response. I know I gave it myself many months ago before I knew the Peanut was… Read more

The Peanut is coming home

It’s time to come clean. Get ready for a long read. While people have called me brave and strong and a great mother to the Peanut, I have been keeping something quiet. For the last two months, the Peanut has not been in my care. She has been in the… Read more

Something to smile about

In the last 15 weeks I have felt worse than I ever thought possible. When I think back to those first two weeks in the hospital I remember walking as if my legs were filled with lead. The grief was physical and heavy and weighing me down. I walked around… Read more

How it feels when your life makes other people thankful for their own

Prefix: I wrote this post (including the note at the end) 10 weeks ago when the Peanut was still in the hospital. I don’t feel this way now. This post was about as bad as it got. I was angry. I was looking for someone to blame. And I didn’t… Read more